Or: Summer’s Almost Over And All I Have To Show For It Is A This Eye Twitch.

Or: My Children Came Home From College And All I Know For Sure Is That There Are Now Cheese Stick Wrappers In Weird Places All Over My House.

Or: Summer’s Almost Over But My Saltiness Shall Go On Forever.

So HEY, remember how I mentioned that this summer has completely and totally sucked and most of it I can’t even talk about but long story summed up, I strongly suspect I was a serial killer in a former life, and am now karma’s bitch? No? Well, I did. And I do. And we’re just a few weeks away from school starting back up, so I thought a Summer Summary (say it five times fast!) might be in order. Because misery loves company, and I remain hopeful that said company will sometimes show up with chocolate.

Without further ado, here are the things you probably didn’t care about at all that have been the hallmarks of my personal summer of 2018:

The Continuing Saga of My Stupid Face
I am certain I have whined about my skin here more than once. I get eczema on my face because I am a delicate princess and because I could easily cover unsightly skin crud occurring literally ANYWHERE ELSE on my body, but no, of course it’s on my face. There was a (brief) period of time after I did this crazy elimination diet thing wherein I’d determined wheat was certainly an aggravating factor—if not the actual culprit—and I stopped eating wheat and my face was… almost normal. For a while. Only almost, though, because I still get zits on my chin with regularity, because why not menopause AND acne, amirite?

Anyhoo, although I have invested a small fortune in skin products for the chronically delicate and easily inflamed, I almost never wear makeup because no matter what it is, it angers my skin. But! I started doing community theater again, so of course I’m not just wearing makeup, but STAGE makeup. Which of course my face just LOVES. So I did a show, wore some makeup for the run, my skin got angry, I babied it for a while, my skin improved, I promptly did another show, lather, rinse, repeat. Typical. BUT THEN I did a show this past winter and happened to notice before the run started that my face was COMPLETELY CLEAR. Like, simply beautiful and smooth, the likes of which I probably haven’t seen since my prepubescent days (roughly 100 years ago). “Huh,” I remember thinking. “My skin’s looking pretty good.” This was my first mistake. As the run progressed, my skin became angrier and angrier, to the point where I was wearing more and more foundation to cover it, which was of course making it angrier, and then I (THIS IS NOT A JOKE) basically hid in my house for a solid week following the last performance so that my poor face could be 100% makeup-free but I wouldn’t scare any small children.

Well. My face never healed. It’s been MONTHS. And by about a month ago it was clear to me that NOTHING I was using on my skin was making it any better, and I had reached the point where I was legit tearing up every time I washed my face because all my skin hurt. Don’t ask me how long it took me to realize this was not normal because I now realize I’m a complete dumbass. I finally went to the doctor and she was all OH MY THAT IS A RAGING STAPH INFECTION and I guess it’s good my face didn’t completely rot off?

There’s a happy ending to this story, though: I took some antibiotics for a week that made me want to barf ALL THE TIME (not the happy part), and my skin stopped hurting (the happy part). I still look like I have leprosy, but at least now I’m scheduled to see a dermatologist next month. Yay?

The Continuing Saga of Don’t Ever Ever Ever Ever Own a Pool
I think I never even told y’all how we opened the pool this summer right before Otto left town for a couple of weeks, reasoning that I could start treating the water and running the pump and the kids could swim while he was away, etc. We got the cover off, and it turned out the pump had died over the winter. NEAT. But that’s okay, because Otto called and arranged for the Pool Place to come install a new pump the following week.

The day before they were supposed to install it, I got a call. “Yes, um, hi, Mrs. Otto? This is Dude from the Pool Place. Was it a WhirlyGig1000 pump that your husband ordered? Or a regular Thingymabob500?”

Good thing we had engaged in a lot of romantic conversations about the pool pump before his departure. I was ready for this! “Yes, it’s the WhirlyGig1000. That’s what he ordered.”

“Oh, I just wanted to make sure. People usually get the Thingymabob500.”

“Yes, but see, we have the Thingymabob500 right now, and it died, so we decided to upgrade. Are you still coming to install it tomorrow?”

“Oh, yes ma’am, we are. We’ll see you at noon tomorrow.”

I got off the phone feeling quite smug. That feeling lasted until about 11:00 am the following day, when someone ELSE from Pool Place called to say that they would NOT, in fact, be coming to do the installation, because they had accidentally ordered a Thingymabob500 instead of the WhirlyGig1000.

I was not impressed, to put it mildly.

They did finally come to install the pump about a week later, by which time the uncovered pool—untreated, because we had no way to circulate the water—had turned into a veritable swamp. I took myself down to Pool Place and spent my entire life’s savings on pool chemicals, went home and dumped everything into the pool, got the pump going, and once again felt very smug. Over the next few days I continued my specialized water treatment protocol, and by the time Otto returned, the water was nearly clear.

It remained nearly clear… never quite clearing… until, finally, algae began to grow again. Because the salt cell had failed. (LITERALLY THE ONLY THING LEFT TO REPLACE ZOMG.) (In a saline system, no salt cell = no chlorine. Whoops.) Otto ordered a new salt cell, and promptly left town again. In the meantime, I added chlorine by hand as needed.

Everything is fixed now. We make the children swim every damn day because that stupid pool is their inheritance.

The Continuing Saga of Baptism by Fire
I may have also mentioned that I joined the board of my local theater company because I’m all about community service. (And by “I’m all about community service” I mean “I knew this particular position would be entirely too much work and mostly thankless but I was asked to do it and flattery will get you everywhere with me.”) I still have no earthly idea what I’m doing, but I’m getting a lot better at faking it. So that’s good. On the other hand, I knew going into it that this particular job (handling season tickets) was going to be most time-consuming during the summer, and somehow I reasoned that that was perfect, because everyone has extra time in the summer, right?

No. NO. Everyone but ME has extra time in the summer. You know what I have in the summer? I have extra people in my house who say things like “Mom!” and “I need your help!” and “PAY ATTENTION TO ME” and “I didn’t leave that there, it was your other kid” and so on. So first I had to design a whole brochure (spoiler alert: I have never designed a brochure in my entire goddamn life and had no clue what I was doing) and coordinate with the printer and figure out a mailing list (another spoiler: not as easy as it sounds) and coordinate all this STUFF while my children were being… ummmm… rather needy. And I finally got it all done and—hey, let’s set humility aside here—the brochure looks great and I did a really good job and I was so, SO proud of myself for getting everything done.

But, uh, here’s the thing. I had no sooner breathed a sigh of relief than people started, y’know, ORDERING TICKETS. And processing these orders is ALSO my job. So basically by doing a good job on the first thing I made a lot more work for myself on the second thing, and it’s fine, it’s all fine, it’s GREAT SO GREAT HONESTLY YES IT IS, but it is also a lot of time and probably the wrong time of year but oh well.

The Continuing Saga of But She Doesn’t Look Sick
It’s almost funny to look back, now, at allllllll the years of posts about Chickadee either being sick, or itchy, or injured, and our collective bewilderment over all her bizarre issues and how nothing had anything to do with anything else, no one ever seemed to be able to explain to us why she could sprain her wrist just by pretending to be an airplane (true story), or why she spent about four years completely covered in rashes and hives every summer, or why when she got mono she was one of the rare cases where “feeling yucky for months” is skipped in favor of ACUTE LIVER FREAKOUT GO DIRECTLY TO THE HOSPITAL FOR A WEEK DO NOT PASS GO DO NOT COLLECT $200.

I probably didn’t mention or glossed over a lot of what’s happened in the last few years as regards her health, but the basic gist is that since recovering from last summer’s bout with mono, Chickie really never recovered. She has not been the same. I mean, the good news is that she’s otherwise happy and doing amazing things and being your basic rock star of a young adult, but the bad news is that we have spent the entire last year going from doctor to doctor and trying to figure out What The Hell Is Going On.

[Sidebar: Should you be interested in an abbreviated list of Assorted Clusterfucks with which my kid has dealt this past year, they include (but are not limited to): a severe bout of costochondritis that was misdiagnosed by the doc-in-a-box in Tinytown as a dangerous heart arrhythmia (necessitating an emergency room adventure and nearly causing ME to have a heart attack); a mysteriously-sprained ankle (woke up with a “sprain”) which was “treated” multiple times to no avail and after wearing a boot for several weeks, her ankle improved but her knee now hurts pretty much all the time; severe fatigue overlooked as “well all college students are tired” by multiple doctors until one finally, grudgingly, diagnosed her with fibromyalgia; heart-rate fluctuations so wild that we bought a FitBit HR so we could record them and SHOW THEM TO A DOCTOR because surely you must be mistaken, surely you are a perfectly healthy young adult and there is no way your resting heart rate of 60 shoots up to 135+ every time you stand up (except that it does); constant pain in a variety of places and types; and finally, the last few months she’s started having symptoms of neuropathy (but no, it can’t be neuropathy, she’s perfectly healthy and so young, blah blah blah).]

I wish this story had a happy ending. What it has is a nearly-year-long wait to see a rheumatologist who clearly can’t get out of the room fast enough each time he sees my daughter, because her case is not straightforward and he can’t just toss a prescription at her and be a hero. She now has a provisional diagnosis of Ehlers-Danlos Syndrome, which does indeed tie together EEEEEVERYTHING she’s been experiencing, but the rheumatologist will not diagnose it “for sure” without corroboration from a geneticist. Well HEY guess what! She saw a geneticist a little over a year ago and we asked about EDS then, and the geneticist basically said “Well if she has it, she has the kind that doesn’t show up on genetic testing so I don’t see any point in testing her.” So now she’s waiting to see another geneticist. In December. So that she can be… not tested again? I’m not really clear. But hooray for being about 200x more symptomatic right now than she was last time, I guess? Maybe we can get a “real” diagnosis at last.

… but even a confirmed, official diagnosis pretty much gets you nothing, because there’s no real standard of care. So that sucks. A lot. She’s doing okay, but in a single year she has gone from having occasional issues to having daily pain and limitations, and it’s hard not to what-if the future, y’know?

I have no tidy way to conclude this section. It just sucks.

The Continuing Saga of Let’s Pretend We’re Not Living Saga to Saga
Remember how I used to always say “OH LOOK, SOMETHING SHINY!”? Now instead of saying that, I just strive to live like “OH LOOK, SOMETHING NORMAL!” is something I could say about most of my world. Ha! So look—Chickadee and I faced off on a common point of strife between college students and their parents, because isn’t that just delightfully normal? It seems like it might be. And I need all the normal I can get, right now.

[Edited to add: I wrote this post, and a few hours later, Otto walked in the door with a small box. “I’m misery!” he said, handing it to me. He’d read the part about misery loving company and how I hoped it would bring chocolate, so he did. I already loved him but that may well be the sweetest thing he’s ever done.]

30 Responses to “How I Spent My Summer Vacation”

I am sorry! BUT, if you haven’t already found it, I need to leave you someone to chat with about EDS – Amy Clark at http://www.momadvice.com. She has it and I believe her children also have diagnoses, and she has some resources!

ZOMG! I have EDS too; fortunately the hypermobility type which isn’t life threatening.

A few years ago, our family doctor thought my daughter might have it, and sent her to a geneticist, which meant 8-9 months from the day we called until they could squeeze us in. I went with her even though she was over 18, because I wanted to hear it first-hand. The geneticist gave me a freebie and told me I had it too. It’s genetic, so that wasn’t a stretch. The testing wasn’t done with bloodwork, but using the Beighton Scale, family history, and looking at our skin.

Because I didn’t officially see the geneticist, it’s not in my medical records, so I haven’t brought it up to my new doctor since I moved out of state. It’s supposedly a “rare” disease, but I suspect that it is under-diagnosed because doctors THINK it’s rare.

It sounds like EDS. My heart goes out to you and Chickie for all you have been through together. I felt proud of both of you for you article on alcohol for Alpha Mom. You did a good job of educating her and although she didn’t follow your advice to the letter she took out what was important and formed her own plan. She has grown into such an awesome adult…both of you have credit for that…you both put in the work….

Soooo- it took them 2.5 years to diagnose my 2 older boys- and I’m the lucky carrier, which explains all the problems that I have had since I was oh, an adolescent. It is nice to have a diagnosis, but the whole suck it up and deal standard of care is, well, sucky. So sympathetic and empathetic and eager to hear if you find some good help.

There is a YouTuber, Martina (of Martina and Simon, aka Eat Your Kimchi) who also has EDS. She is very open about her struggles and how she copes and conquers. Her “build a ladder” attitude is inspiring.

Do a Google search with the terms ” youtube eatyourkimchee ads” and you will get a summary of her videos addressing what living with EDS is like for her.

You will also get to see some amazing, entertaining, and informative videos on their time in Korea and now in Japan. They are a Canadian couple that went to Korea to teach English and found a whole new life.

We are walking the same road with my daughter right now. Have a diagnosis of joint hypermobility and am trying to decide if we’re going to pursue a hEDS diagnosis with a genetisist. One thing we’ve found kind of helpful is physical therapy with someone familiar with hypermobility. They told us strengthening the muscles around the joints will help prevent hyperextensions and injuries. She’s been going once a week for a few months and I think it’s helping? Maybe? Although she’s currently got a dislocated kneecap from taking a step up onto a rock (seriously no higher than 2 feet tall). At least she has a cool story of rock climbing for this injury instead of “well, I got up off the floor” which is what caused not one, but two long term injuries.
Thank you for sharing your stories. It helps knowing there are other people going through similar struggles.

On the skin issues – this is definitely a YMMV issue, but I finally developed a skin routine that keeps my rosacea (complete with massive amounts of pustules) at bay. I also had to give up tomatoes (sob), because my face would behave as if massively sunburned, complete with several days of massive peeling.

Anyway, an inexpensive, generic 5% benzoyl peroxide used only at night was the key to making everything else work. I built up to it, starting with a very small amount every other night. Once my skin cleared up at using it every night, I stayed with that.

Light therapy made more inroads on the inflammation. For me, red followed with yellow LEDs does the job, but other colors might be better for eczema. Hemp oil as a moisturizer. A PITA, since it has to be kept in the refrigerator, but it does the job and keeps my skin calm.

I can’t leave tea tree oil on my skin, but it does help, so I add it to Dr. Bronner’s Sugar Baby soap and use that as a face wash.

With all of this, my skin is clear, and no longer turns bright red if I am warm. One or more of these may work for you. Good luck! Crappy skin is no fun.

Specialist appointments are the worst. I am waiting to see one for a checkup after missing an appointment in May – I called to make the appointment last year – and their first opening was this November. Fortunately – it is just a routine follow-up, nothing serious. Hope the new geneticist can help Chickadee and that things get better. Also, good luck with your dermatologist – glad you got your infection diagnosed, as a case of cellulitis I didn’t recognize put me in the hospital for about three weeks a couple years ago.

I have only virtual hugs and virtual chocolate for you and Chickadee. I’m sorry she’s going through this and that you’re going through having her go through this. I hope some of your commenters with EDS connections/experience have helpful things to share.

Also – I hear you on the volunteering! As someone who goes to a lot of regional and community theatre, I greatly appreciate everyone who does the volunteer work that makes it all happen. (And I can’t remember if you’re anywhere near Atlanta – if you are, there’s an incredible-looking production of Titanic at Serenbe Playhouse, where they are actually sinking the “ship” in the lake, and we have seen the actor playing Andrews the builder many times and he is completely fantastic.)

“I get knocked down, but I get up again You’re never gonna keep me down.” There are times when I need this song running through my brain. I know, sometimes it doesn’t seem possible to get up again. Empathizing.
The Alpha Mom article is great. I’m a believer in the talk-talk-talk method. I hope my daughter is listening (sometimes all I get by way of discussion is a groan).
BTW, the link to the study Chickadee referenced didn’t work.

I’m sorry to hear about all of Chickie’s ailments. I hope she will be treated appropriately and feel better soon. I have never heard of EDS, but I do have eczema. It likes to surprise me with where it decides to pop up. This time it’s on my arm, inner left leg and on my back at the waistline. Sigh..I do hope Monkey and the dogs are doing well. And I must say, that Otto is a peach.

Omg the flipping EDS diagnosis. I’ve been trying to get my daughter diagnosed for years, but we have a single pediatric rheumatologist in the state and after waiting to see him, he declared everything to be in her head and caused by her bipolar meds. After spending the entire visit with him ranting about mental illness being fake and supported by a bunch quacks because there was no scientific researches (his “real” job was research and he did this on the side) that actually proved it, he stated all of her various issues would be fixed by exercise and proper sleep habits. Never mind years of records and weird lab results, heart arrhythmias, joint dislocations and everything.

She’s now an adult, and we’re trying to get out of the accepted system and see a regular rheumatologist that will be realistic in treatment.

I have EDS. I’m getting genetic testing, but given that it doesn’t always show up on genetic tests…well, that’s $400 I’ve spent that may or may not tell me I have something I definitely have. (My ribs periodically dislocate themselves. It’s cool.)

But a diagnosis helps, because good specialists (of which I have many) will take you and her seriously and help you develop a care plan that works. Because it is about managing her symptoms, whether they’re “standard” or not, and that looks different for different people. I think it’s much like managing mental health, which I think is a better proxy for zebra diseases than normal people illnesses because of the variability and the needing to try different things before you get it right.

Thankfully, I have only hypermobility and chronic pain challenges, though they are fairly severe, and a wonderful physical therapist to put my bones back where they go, and a wonderful person to help me manage strength and mobility, and a wonderful dermatologist to help with weird skin, and a wonderful pain management physician, and a wonderful cardiologist to double-check that I don’t have cardiac co-presentation. Which sounds like a lot, and some days it absolutely is…but I mean it mostly to say there are physicians and practitioners out there who know what they’re doing and how to treat folks with EDS, and strong advocacy will absolutely help you find them. I hope you both hang in there — it’s a long, weird, windy road, but there is a path to an adult future that is pretty rewarding, even if it doesn’t quite look like everybody else’s. (I’m 34, diagnosed at 29. It explained SO MUCH, wow.)

I’m a longtime reader but first time commenter, and happy to share my experience and what I know if you are interested.

How is Monkey? Been following your blog for years. You are a great writer and i have copied your phrase Look something shiny many times while trying to avoid house work. Or anything i dont want to do. Good times!

Aw, thanks. He’s doing okay but it’s been a long year and among other things, we are starting to think he might also have EDS (it’s genetic). So. There’s that. OH LOOK, SOMETHING SHINY OVER THERE GOTTA GO.

Hugs to you and Chickie. So sorry she is dealing with this at such a young age and hope that Monkey does not also have it. And hoping she finds ways to manage the symptoms. The alphamom story was great. Your writing never fails, even when it is about tough topics. Hope the rest of the summer brings some fun and lots of chocolate.

If it’s been only a year since she had mono, try not to panic (too late, I know). After I had mono at age 26, I wasn’t right for a while. The mono virus can have a lot of weird effects. I was actually diagnosed with Raynaud’s syndrome, yet after a few years those symptoms never reoccurred, thank goodness. The rheumatologist who saw me even suspected that the weird symptoms were sort of a mono aftereffect.

I have fibromyalgia – have had mild symptoms of it all my life but didn’t know it, until my 40’s where stressful events triggered a bad flare and it’s been with me ever since (now 53). It does sound to me like your daughter has fibromyalgia. I’ve been to enough specialists and had enough tests to know it is probably at least some of her issue. The pain is always, but not always severe. It can be anywhere and everywhere. Anywhere you touch me feels bruised. the chest pain is horrible at times, and not bad at others. I’ve been in the ER multiple times thinking I’m having a heart attack. I have palpitations always. Fast heart rate on and off. Heart tests perfectly healthy other than an arythimia that is treated with metoprolol but is not considered damaging to the heart or dangerous. All my muscles feel sore and stiff all the time. If I sprain something it feels sprained for ages. Any of this sound familiar? It took four different doctors three years to figure this out for me. MRI, Ct SCAN, many many blood tests, nothing nothing and more nothing.

The good news is.. it won’t kill ya. Basically it’s a matter of learning coping skills, learning not to stress your body or mind too much (ha!) eating healthy, keeping active – keep moving! Walking and light weight training and a good diet – staying away from WHEAT and sugar (mostly but I suck at that) all really help.